Posts: 23

Topic: Jeff's Update

Hi All,I'll keep this short and sweet . The last couple of weeks and then next couple of weeks: I have had my lung cavity drained, My Morphine increased to 300 MGs per day with 8MG's of hydromorphone for breaK throuth pain. Two weeks of external 3-D radiation. Xray of ankle, sonogram of right leg due to swelling. My pain in the rib mets has decreased considerabally and the soft tissue tumor closing off my esophagus responded to radiation. I can now eat without choking and hiccupping. Body has been having uncontrolled jerking like mini siezures, awake and while trying to sleep. Has any one ever had uncontrolled jerking of the body? It's like sticking your finger in to a live electrical outlet. Kinda wierd to say the least. After comletet evaluation from the team of Doctors, starting tomorrow, I will be having MRI to get better /clear picture, then on to spinal decompression and spinal nerve block. Basically been told I could be paralyzed from the chest down if something is not done fairly soon because on the continous pressure on my spinal nerves would kill them and I weould not have any communication due to lost of signal impulses from th big ole brain. Along with this is a nerve block as well, as my body has had all the radiation that it can handle , that's why the nerve block plus i can't livie omn Morphine contiunously as my body will not with stand it . After giving practically two years of suggestions and advice, I decided to follow one from a site member and give Tarceva a try. I figured I've tried everything else ,why not give it a whirl. I guess my Ct Scan earlier this week got some doctors hopping and they all finally came to the same conclusion. So in a couple weeks after a this ring around the rosy, I'll be giving you all anothe rupdate hoping to say as is going well. Basically I 'm kinda on bed rest until things calm down. Actually I feel pretty good with little or no pain right now, but I can feel all the pressure and still having some jerking, but minor really. Well, my wife is keeping an eye on me,as she knows staying on the computor to long creates aggravation for me. So, I'll say cheerio for now! Hope all is going as well as can be expected for the rest of you. Remember Stay positive and hope is beautiful! The good news is Ct scan showed all other tumors similar in size or stable. So, If I can just get rid of this one pain in the posterior. Did show some fluid returned to the hip area, but that's expected with all the tramam going on. I can start reducing pain meds again. Knock on Wood! So, Tarceva what has been the primary side effects for most of you? Mu Onco said I should have practically none with the exception of possible bad rash and acne on the face. I told my wife just make believe I'm a pimple head teenager going through that acne phase .Ha! Chat to ya soon . I'm sure I won't be able to keep off site for two weeks, but if so ,it's because I'm busy as a bee.

Re: Jeff's Update

Hi Jeff! We just feel so bad that you have to go through all of this KRAP! But as usual you are something else! We love you and will be praying that the Tarceva works. If you go through puberty again with the acne..I tried Lisa's remedy as did my grandkids of washing your face with baking soda and it really works! If you don't have acne it makes your face as soft as a baby's you know what. Take care of yourself and know that we think about you every day!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Jeff's Update

Jeff,

Good luck to you. You & your family are in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: Jeff's Update

Re: Jeff's Update

Thinking of you, Jeff and family. Sending up prayers and sending you cyberhugs. Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain." ~g. b. hinckley

Re: Jeff's Update

Jeff, I hope things go well with the Tarceva. That might be something down the road for Charlie too. You have really been through it. I don't know what the jerking is - wonder if a neurologist would be of any help?? You and Val keep holding on and sharing your love. That's what keeps me and Charlie going! Get some rest - no more Lowe's trips and home projects - just for a little while, okay?

Re: Jeff's Update

Hey JeffI am so sorry to hear what you are going through and I know the Tarceva is going to do the trick. You are an inspiration to everyone and I know that God is going to take really good care of you. Keep in touch. Our prayers are with you during this time.

Re: Jeff's Update

Thanks to you all for the encouragement. Called this AM to ask why I have not recieved my appointment. Could not not believe it, well yes I can. The age of computers , the doctor said he was going to put in the order. His fingers never made it to the computer Ha!. OOps just a minute, Wow! Got my appointment fist thing in the morning. Now the ball is rolling. You got to stay on top of things I'm telling ya! Thanks again and have a beautiful day as possible.God Bless,Jeff G.P.S. Carol, Did further checking in to Tarceva and it is not suppose to really mess with your blood counts ; platelets, RBCs, WBCs; just have to be ready for the mild to severe face rash. Also I 've double checked on signs of severe side effects, that would cause discontinue. Doc said I can press on with all else even while taking. Cheerrios!

Re: Jeff's Update

Hi Charlene, Thanks for the the Love . I'll take all I can get. It's been a while since the passing of your Dad. How have you been doing ? I'm sure you miss him so much. It's so hard to let go of the ones we love, especially your Daddy's and Mommy's.

Re: Jeff's Update

Jeff,

Hi, I would have responded sooner but I haven't been on the site in a few days. Hoping that Tarceva works for you. My mom was on Tarceva for three months along with Gemzar. Not sure what caused what side effects but here is what she experienced:

-Rash - which was really not a big deal. Mostly on her chin and nose. I found it hard to really see unless I was close to her.-Dryness - she didn't lose her hair but it became pretty brittle and would break off. Plus her fingers would split at the ends (like paper cuts). She just made sure to put on lotion and wear gloves to wash the dishes etc.-Cold - she felt colder than normal. She lives in SC and it would be 90 and she would have a sweater on.-Breathing problems - this was the worst and right now her doctors are still debating if this was due to the Tarceva or not. She did have to be admitted to the ICU and on oxygen etc for a week. It is a side effect in a very small percentage of people (1 to 5%) but something to keep an eye on. If you have any problems it would be good to get an x-ray to make sure that the lungs are ok. She didn't have fluid but more like IDL.

She never had a problem with her cell counts, liver function etc. In fact, about two months in the doctor told her, her red cell count was that of a heathly man. She had also lost about 20 pounds before she went on the drugs but that changed and she put back on about 10 pounds. The best part was she had her scan last month and it showed that all the small spots were no longer showing up and that her tumor on her liver was down from 8cm to 2cm. Overall, they said her scan show 70% improvement. I hope that you have really great results with this. I always tell my mom about you and it gives her such hope and inspiration.

Re: Jeff's Update

Hello Jeff;I want to take this opportunity to thank you for all your words of knowledge, humor and kindness shown to so many of us here on the board. Dawn and I will pray for success in your continued treatment.

"The King will reply, `I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' (Matthew 25:40)

Re: Jeff's Update

Thanks again Guys, My medically team has been giving me the strange pity look just lately, but I have a surprize for them. Each day is new and it is filled with the Lords Love. There is plenty of faith, trust and hope! to go around for all!God Bless, Jeff

Re: Jeff's Update

NO strange pity looks for us, right Jeff? Have you had the "quantity versus quality" speech yet when you think they're giving up? Just when the doctors want to give up, you and Charlie (and many others on this board) jump up and surprise them. Let us all be encircled in Christ's love.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.